Produced by Washington Regional Transplant Community 7619 Little River Turnpike, Suite 900 Annandale, VA Be-A-Donor

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1 Produced by Washington Regional Transplant Community 7619 Little River Turnpike, Suite 900 Annandale, VA Be-A-Donor

2 I. Introduction... 4 II. The WRTC Program... 5 Service area... 5 Mission... 5 Professional services Organ and Tissue Recovery... 5 Living Donor Program... 6 Donation After Cardiac Death Program... 7 Community Education... 8 Professional Education... 8 Donor Family Advocacy... 8 III. Overview of Transplantation... 9 History... 9 Patient waiting list Transplant centers Allocation process Transplant Recipients International Organization (TRIO) IV. Overview of Donation Legislative aspects Local legislation (WRTC Service Area) Legal aspects (include Federal regulations) Financial aspects Recovery process Organ Donation Flow Chart Donation after Cardiac Death (DCD) Organs for donation Tissues for donation Donor hospitals and healthcare facilities Other organ, tissue and eye recovery agencies Whole body donation Washington Regional Transplant Community 7/2013

3 Barriers to Donation Reasons for the organ donor shortage Why people choose NOT to donate Lack of information Myths Religious views V. Questions and answers about donation VI. Recent news stories Risk of infectious disease LifeSharers Transplant tourism NY-NJ Organ Trafficking Allegations VIII. Resources Books Internet sites WRTC contacts Other important contacts IX. Glossary X. Language Washington Regional Transplant Community 7/2013

4 elcome to Washington Regional Transplant Community. This guide is designed to answer many of your questions regarding organ and tissue donation and the transplant process. It can be used as a resource for patient information, public presentations and community education. On January 2, 2013 there were 1,982 people in the Washington, D.C. metropolitan area and 116,905 nationwide waiting for life-saving transplants. A hospital call to Washington Regional Transplant Community (WRTC) puts into motion a complex and sophisticated series of events which brings together a donor family, an organ donor, surgical recovery and transplant teams and all of these patients on the waiting list. In 2012, 132 people who died in the Washington, D.C. area donated their organs. As a result, 356 men, women and children were given a second chance at life through heart, liver, lung, kidney, intestines and pancreas transplants. Countless others benefited or will benefit from the 298 patients who donated tissues including bone, corneas, heart valves and skin, the most patients ever to have donated tissue in this area. The need to spread the word about the shortage of available organs is critical. Educating our community about donation has become a primary mission for WRTC staff, Friends for Life volunteers and those who are waiting for transplants. The following sections provide an overview of WRTC and its services, transplantation issues, and organ and tissue donation. If you would like further information or would like to volunteer, please contact the WRTC Community Education Specialists. Call Be-A-Donor, or visit Remember, DONATION SAVES LIVES! 4 Washington Regional Transplant Community 7/2013

5 ounded in 1986, the Washington Regional Transplant Community (WRTC) is the federally designated organ procurement (recovery) organization (OPO) for the metropolitan Washington, D.C., area. It is a non-profit agency responsible for recovering and distributing organs and tissues used in lifesaving and life-enhancing transplants, as well as medical research and therapy. There are 57 OPOs across the nation. Service Area WRTC covers all of the District of Columbia, Northern Virginia and several counties in suburban Maryland. WRTC serves approximately 5.1 million people, 44 hospitals and five transplant centers. Mission It is the mission of the Community to recover organs and tissues by preserving every donation option, excelling in recovery and placement and providing care for donors and their families. Our vision is healing communities through organ and tissue donation. Professional Services: Organ and Tissue Recovery WRTC employs up to 20 full-time clinical recovery staff whose responsibility is to: handle all donor referral calls from hospitals discuss organ, eye and tissue donation with families evaluate the medical suitability of prospective donors provide medical data necessary to identify potential transplant recipients call United Network for Organ Sharing to place the organs as quickly as possible manage the care of the potential donor for the best possible recovery outcome coordinate the recovery of organs and tissues with one or more surgical teams follow up with all donor families and the recipients of their loved ones organs help conduct education programs for healthcare professionals at area hospitals 5 Washington Regional Transplant Community 7/2013

6 Professional Services: Living Donor Program The Washington Regional Voluntary Living Donor Program is a partnership between WRTC and five Washington-area kidney transplant programs: Children s National Medical Center, Georgetown University Medical Center, Inova Fairfax Hospital, Walter Reed National Military Medical Center and Washington Hospital Center. This is the first community based program in the country and offers innovative ways to increase the supply of organs. While there are many who donate kidneys to relatives and friends, it is sometimes difficult to find a person whose blood type matches that of the patient. The Program offers this option Voluntary Non-Directed Donation: This addresses the person who wants to donate a kidney to the general pool with no specific recipient in mind. Harold Mintz donated his kidney to Gennet Belay in December He had never met Belay before this picture. Their families have become friends, celebrating life-giving donation throughout the years and speaking on behalf of WRTC in many venues. In 2006 Gennet and her husband celebrated their 25 th wedding anniversary with the Mintz family in attendance. 6 Washington Regional Transplant Community 7/2013

7 Professional Services: Donation after Circulatory Death Program (DCD) In order to preserve every option to donate organs, WRTC follows all national standards for donation-after-circulatory-death program in several area hospitals. Many people want to donate organs and some may do so if they have died from a neurological or brain insult or injury but will not meet the definition of brain death. The after-circulatory-death protocol allows someone to donate abdominal organs when the following circumstances are present: a patient has suffered devastating and unrecoverable neurological or brain injury resulting in ventilator dependency, the patient/family has decided to withdraw mechanical ventilation, and death from cardiac or respiratory arrest will occur within one hour following withdrawal of mechanical support. After the decision to withdraw mechanical ventilation is made by the family, or perhaps the patient through an advance directive, the hospital staff will ask WRTC to discuss organ and tissue donation with the family. The recovery would occur only after support is withdrawn and after death is pronounced. By using this type of recovery, people now have a new option to donate organs. Patch for Donor Remembrance Quilt 7 Washington Regional Transplant Community 7/2013

8 Professional Services: Community Education WRTC has a varied public education program designed to reach all segments of the community. This includes free distribution of brochures, some especially designed for African-American, Latino, and Asian-American audiences. WRTC sponsors initiatives including: Friends for Life Ambassadors (volunteers) who participate in community health fairs and presentations; youth programs outreach; materials for religious communities to celebrate National Donor Sabbath; Patient Seminars which offer information to those waiting for organ transplants. The goal? Donation begins with the decision to donate: Everyone should register to be a donor. Professional Services: Professional Education Hospital Services and Professional Education Specialists work with the recovery staff to provide continuing education programs for healthcare professionals at area hospitals. Working to reach doctors and nurses in Intensive Care Units and Emergency Rooms, WRTC plans in-services, grand rounds, orientations, and activities surrounding national events. WRTC volunteers participate as Ambassadors to give their personal thanks for supporting donation directly to hospital staff. Many local hospitals have Donation Committees which advocate for improving donation processes in their institutions. The national Breakthrough Collaboratives on Donation and Transplantation have improved donation rates by sharing and implementing best practices of successful health care teams composed of hospital and OPO personnel. Professional Services: Donor Family Advocacy The Donor Family Advocacy program offers the following aftercare services to its families: a funeral home memorial, follow-up letters, grief seminars, a comfort shawl program, bereavement literature, an annual celebration in remembrance of donors, a memorial quilt project and other ways to honor those who give the gift of life. Donor families serve on a Council designed to give input to WRTC about issues that affect the Advocacy program, or become effective Friends for Life volunteers. WRTC s donor quilts have become vital backdrops for events in the community, the annual WRTC Donor Family Gathering, regional meetings of the United Network for Organ Sharing and at many local hospitals and civic organizations. Donor family quilt 8 Washington Regional Transplant Community 7/2013

9 History of Transplantation and WRTC Date Event 1905 First successful cornea transplant was performed First successful kidney transplant was performed by Dr. Joseph E. Murray, Bright & Women's Hospital, Boston First successful kidney transplant from a deceased donor was performed First lung transplant was performed First successful pancreas transplant performed by Drs. William Kelly and Richard Lillie at the University of Minnesota, Minneapolis. First successful liver transplant performed by Dr. Thomas Starzle at University of Colorado Health Sciences Center, Denver. First successful heart transplant performed in the United States by Dr. Norman Shumway at Stanford University Hospital, Stanford, California. The Uniform Anatomical Gift Act established the Uniform Organ Donor Card as a legal document in all 50 states, making it possible for anyone 18 years or older to legally donate his/her organs upon death End-Stage Renal Disease Act set up Medicare coverage of most kidney transplants First successful heart-lung transplant was performed by Dr. Bruce Reitz, Stanford University, Stanford, California FDA approved cyclosporine, the most successful anti-rejection medication developed to date National Organ Transplant Act established nationwide computer registry operated by the United Network for Organ Sharing (UNOS), authorized financial support for organ procurement organizations and prohibited the buying and selling of organs. The Washington Regional Heart Transplant Consortium (WRHTC) was established providing heart transplants to patients at five local hospitals. Member hospitals included Children s Hospital National Medical Center, Fairfax Hospital, The George Washington University Medical Center, Georgetown University Hospital and the Washington Hospital Center. Dr. Edward Lefrak performed the first successful heart transplant in the Washington, D.C. area at Fairfax Hospital. Required Request laws were established in Pennsylvania. This law required hospitals to develop policies and procedures for approaching families about organ donation. Nearly every state has enacted some form of Required Request law WRHTC changed its name to the Washington Regional Transplant Consortium and became the organ and tissue procurement organization for the metropolitan area, including 9 Washington Regional Transplant Community 7/2013

10 Washington, D.C., six counties and one city in Northern Virginia, and four counties in suburban Maryland WRTC received the Certificate of Need to perform liver transplants in the Washington area The transplant center at Walter Reed Army Medical Center joined WRTC Dr. John Macoviak performed the first successful multi-organ transplant (heart-pancreas) in the Washington, D.C., area at the Washington Hospital Center. Dr. Thomas Starzl at the University of Pittsburgh reports clinical success of promising new anti-rejection drug called ProGraft (FK-506). Dr. Clive Callendar and Dr. Velma Scantebury performed the first successful liver transplant in the Washington, D.C., area at Howard University Hospital First liver transplant was performed from a living-related donor WRTC formed a partnership with LifeNet, a non-profit tissue bank, to recover tissues in metropolitan Washington, D.C., hospitals First lung transplant was performed from a living donor Dr. Joseph E. Murray (who performed the first kidney transplant) was awarded Nobel Prize for Medicine. Dr. Edward Lefrak performed the first successful lung transplant in the Washington, D.C., area at Fairfax Hospital Minority Organ and Tissue Transplant Education Program (MOTTEP) was established First successful small intestine transplant was performed 1992 A baboon liver was transplanted into a man dying of liver failure WRTC established a Teens for Transplant program at McLean High School, McLean, Virginia -- the first on the East Coast WRTC held first annual Donor Family Gathering A young woman dying of lung failure caused by cystic fibrosis received partial lobes from lungs of both parents Shady Grove Adventist Hospital transplant center joined WRTC Capt. David M. Harlan and Lt. Cmdr. Allan D. Kirk, at the Navy Medical Research Institute, along with other Navy researchers, developed a new medical therapy that re-educates the immune system so that it recognizes transplanted organs as being the individual's own, thus preventing the organ from being rejected The Health Care Financing Administration (HCFA) revised Medicare Conditions of participation (COP) as measures to increase organ and tissue donation. Hospitals now must call the local OPO on every death and every potential death by neurological or brain criteria. 10 Washington Regional Transplant Community 7/2013

11 WRTC established a perfusion laboratory to pump kidneys prior to transplantation, thereby increasing the viability of the organs. WRTC established a Tissue Recovery program designed to meet the increasing tissue donations in the Washington area WRTC established a Living Donor Program in partnership with seven local transplant centers On December 12, 2000 Harold Mintz and Alyce Sullivan became the first two individuals to donate a kidney through the Washington Regional Living Donor Program. Each donated a kidney to a non-designated recipient The world's first self-contained artificial heart is transplanted into 59 year old Robert Tools in Louisville, KY on July 2, A couple of months later the second and third patients were transplanted with artificial hearts Virginia s new state-wide on-line donor registration system is launched at The new system should streamline communication for organizations involved in organ donation as well as make it easier for Virginians to designate themselves as donors Baby heart match Doctors in the United States have followed Canadian doctors and successfully transplanted hearts into newborn babies with mismatched blood types December, 2004 was the 50 th Anniversary of the first transplant in the United States A record 151 citizens become organ donors Launch of DC organ, eye and tissue donor registry: DonateLifeDC.org 2007 Revised Uniform Anatomical Gift Act passed in Virginia and District of Columbia WRTC changes its name to Washington Regional Transplant Community 2007 WRTC achieved new benchmark: 70% of every medically eligible organ donor donated Launch of Maryland organ, eye and tissue registry: Donate LifeMaryland.org DonateLifeDC registry leads the nation in increasing the number of registered donors by 86% since 2006 when it launched. Launch of Virginia organ, eye and tissue registry: DonateLifeVirginia.org Celebrating 1,000,000 registered donors throughout the U.S WRTC s options to families for research donation provided a record number of local livers for hepaticyte cell transplantation into babies born with liver disease. 11 Washington Regional Transplant Community 7/2013

12 Current Patient Waiting List This information is provided by WRTC for patients waiting at local transplant centers and by UNOS for those waiting across the nation. The figures in this example will not vary greatly over a six-month period. You may obtain a new version (updated monthly) on the WRTC web site ( patients) or by calling WRTC at Be-A-Donor. THE UNIITED NETWORK FOR ORGAN SHARIING Patients awaiting a life-saving organ transplant Data from the United Network for Organ Sharing (UNOS) as of July 11, 2013 Patients waiting in the Washington, D.C., metropolitan area Kidney 1,605 Liver 170 Pancreas 44 Kidney/Pancreas 22 Intestine 37 Heart 84 Heart/Lung 0 Lung 22 Total 1,917 Patients waiting in the United States Kidney 96,743 Liver 15,773 Pancreas 1,196 Kidney/Pancreas 2,074 Intestine 272 Heart 3,545 Heart/Lung 45 Lung 1,664 Total 118,562* *Some patients are waiting for more than one organ; therefore the total number of patients is less than the sum of patients waiting for each organ. These totals include all active and inactive waiting list patients. 12 Washington Regional Transplant Community 7/2013

13 Transplant Centers in the WRTC Donation Service Area (DSA) Children s National Medical Center Heart, Kidney Georgetown University Hospital Liver, kidney, intestine and pancreas Inova Fairfax Hospital Heart, lung, kidney and pancreas Walter Reed National Military Medical Center Kidney and liver (Liver transplants performed at Georgetown University Medical Center) Washington Hospital Center Heart, kidney and pancreas 13 Washington Regional Transplant Community 7/2013

14 Allocation Process The Organ Procurement Transplantation Network includes all transplant centers in the United States and manages the computerized national waiting list. UNOS, the United Network for Organ Sharing, located in Richmond, Virginia, has the current OPTN contract. Each time there is a donor, WRTC is responsible for following the rules of allocation. To get current information go to 1. WRTC contacts UNOS and enters the donor data into the computer: height, weight, blood group, organs to be recovered. 2. Typically, the allocation for each organ begins with local, then regional, then national patients (with exceptions for livers and one for kidneys noted in #2-3 below). The donors are matched by height, weight, blood group and tissue type, medical urgency and then by waiting time on the list. (See sample list, p. 14). This is all done by computer. 3. The list exception for kidneys is a perfect match (where all six blood markers called antigens are an exact match), which must be offered to the recipient regardless of location. 4. The list exception for livers is that after local Status One patients, regional Status One patients are considered next before any other local patients. Status One indicates those patients who are the sickest and therefore top priority for transplantation (see Glossary). The matching for all non-status 1 patients is done according to MELD criteria (Model for End- Stage Liver Disease). MELD (or PELD for pediatric patients) is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill). It gives each patient a score (number) based on how urgently he or she needs a liver transplant within the next three months. The number is calculated by a formula using three routine lab test results. The MELD score replaces the previous Status 2A, 2B and 3 categories. HHS and UNOS work together, with active public comment, on regulations that will continue to improve the process of organ allocation. 14 Washington Regional Transplant Community 7/2013

15 TRIO The Nation s Capital Area Chapter Transplant Recipients International Organization the Nation's Capital Area Chapter (TRIO-NCAC) was organized in the fall of 1991 by Claude Brady (a heart recipient) and a steering committee comprised of transplant recipients, their families and health care professionals. TRIO-NCAC was incorporated in Virginia as a not-for-profit corporation Goals of the TRIO-NCAC include the following: Providing support to transplant recipients, candidates for transplants and families of both, by sharing experiences and information Promoting public awareness of the importance of organ donation and transplantation Providing updates concerning advances in transplant technology and statistics Providing opportunities to influence issues affecting insurance, medical costs and employment rights TRIO-NCAC meetings: Feature speakers, prominent in their fields, on current topics such as: ` Immunosuppressant medications and their side effects Nutrition and physical fitness Health care coverage issues and advances in prevention and treatment of transplant related disorders One-on-one peer counseling Other TRIO-NCAC activities include: Promoting organ and tissue donation through speaking engagements and participation in local health fairs. Hosting Capitol Hill breakfast meetings to discuss legislative initiatives in transplantation and health care reform. Working with WRTC to help provide information to those who are waiting for a transplant, especially at Patient Seminars; helping with the annual WRTC Donor Family Gathering. 15 Washington Regional Transplant Community 7/2013

16 Legislative and Regulatory Aspects of Donation Uniform Anatomical Gift Act of 1968 Establishes legality of donating a deceased individual s organs for transplantation or other uses (research and/or therapy). Protects health care personnel from potential liability arising from organ procurement. Uniform Determination of Death Act 1980 Recognizes the legality of death by neurological criteria. Determines that the irreversible cessation of all brain function constitutes death in the same way as cessation of heartbeat and respiration. National Organ Transplant Act of 1984 Prohibits the buying and/or selling of organs. Requires establishment of the Organ Procurement and Transplantation Network (OPTN). Paves the way for the United Network for Organ Sharing (UNOS) to be awarded the OPTN contract and to manage the organ distribution and scientific registry. Prevents physician who declares death by neurological criteria from being the same physician involved in transplantation. "Required Request/Required Referral" state laws of the mid-1980s Requires healthcare professionals to assess/identify every potential donor. Provides for every potential donor family to be given the opportunity to donate. Omnibus Budget Reconciliation Act of 1986 (Required Request federal law) Federally mandates Organ Procurement Organizations (OPOs) to coordinate the procurement and transplantation process at local levels. Requires hospital to be affiliated with a federally mandated OPO. Requires hospitals participating in Medicare and Medicaid to establish written protocols for donation in order to maintain certification. The Health Care Financing Administration s (HCFA) revised Medicare Conditions of Participation (COP) of 1998 Federally mandates hospitals to refer all deaths to the local organ recovery organization (OPO). Mandates hospitals to determine who makes the request to potential donor families and requires requesters to either be OPO employees or OPO trained. A hospital meeting of all the end of life caregivers will identify the appropriate requestor, in order to preserve all donation options, as well as to care for the family in a sensitive manner. Requires hospitals to have an arrangement with an eye and a tissue bank, but giving the OPO the first right of refusal regarding a referral. Requires hospitals to work with OPOs in conducting medical record reviews to ensure that the families of all potential donors have been approached. 16 Washington Regional Transplant Community 7/2013

17 Local Legislation in WRTC Donation Service Area (DSA): First Person Consent States In the District of Columbia, Maryland and Virginia the updated Uniform Anatomical Gift Acts (UAGA) state that the donor designation is a legal end of life decision and must be followed by a procurement organization under penalty of law. The law provides circumstances where a donor can revoke the designation in front of witnesses, preserves the right of the next-of kin to make an anatomical gift if the deceased did not do so when alive, and clarifies how, to whom and for what purpose (transplantation, research, education and therapy) the gift may be made. The law affirms that procurement organizations have access to documents of gift and medical records in all three state registries: and The donation gift can be made at the DMV-MVA of all three states or online. A next-of-kin may not revoke a donor decision under any circumstances unless there is clear evidence of a signed and witnessed revocation. 17 Washington Regional Transplant Community 7/2013

18 Legal Aspects of Donation Written documentation of donation wishes may include a Yes to donation on your driver s license, designation on a donor registry, a donor card or an advance directive or will specifying organ donation. In all cases, you should inform your next of kin or your health care power of attorney of your intentions. This is to provide direction to those who will be asked by the WRTC recovery coordinator about your medical and social history. The District of Columbia, Maryland and Virginia are first person consent jurisdictions, where donation wishes of the decedent must, by law, be honored. Financial Aspects of Donation As a non-profit, federally mandated organization, WRTC is committed to the efficient recovery and distribution of organs and tissues. All WRTC expenditures are audited by the Federal Medicare (Title XVIII) program with reimbursement by the government program for kidney acquisition costs. All Medicare reimbursement determinations are subject to federal regulations and the guidelines of the Medicare End-Stage Renal Disease (ESRD) program. Therefore, it is the policy of WRTC to pay appropriate donor hospital and medical charges that are determined to be within reasonable and customary limits. All expenses incurred for donation are charged to the WRTC after: the time the patient is pronounced dead; and WRTC has agreed to evaluate the donor; and written authorization for organ donation is obtained. Costs related to the organ recovery may not be made to the donor s family, estate or insurance company. Any questions regarding coverage or payment of organ recovery activities should be directed to WRTC. WRTC has no financial responsibility for transplant or post-transplant costs incurred by a recipient. These costs are generally covered by Medicare (if the patient is eligible), third party payers (insurance companies) or other private resources. Current law requires that each transplant center have a financial counselor who can specifically address such questions from potential recipients. 18 Washington Regional Transplant Community 7/2013

19 The Organ and Tissue Recovery Process The recovery of organs and tissues for transplantation, research or therapy is a complex process and involves medical professionals at many different levels. What enables the process to work is the commitment of WRTC staff to handle organ and tissue donors 24 hours a day, seven days a week, 365 days a year. Supporting WRTC is a network of professionals at area tissue and eye banks, laboratories that type blood and tissue, transportation companies and others that provide essential services to ensure the success of the transplant. Here is how the procurement process works: (Brain/neurological death process in green; cardiac death process in blue; same process in both cases in black) A referral call is made to WRTC by hospital personnel. Brain Death: Under the same COP, a hospital must notify the OPO if death is imminent (either brain death is expected to be declared or a family has asked to withdraw support). Circulatory Death: According to Medicare Conditions of Participation, a hospital must notify its local organ procurement organization upon every death. The attending physician declares death has occurred. Brain Death: this must be done in accordance with state law and hospital policy. After death, the patient must remain on a ventilator before organ donation can occur. Circulatory Death: If the patient is neurologically devastated and will not recover, AND if the patient or family has decided to withdraw support to allow the patient to die naturally, all hospitals have policies to implement such a request, with end of life comfort measures. A WRTC recovery staff member receives information from the hospital about the patient s death or impending death and evaluates his/her suitability as a donor. Brain Death: A patient who is dead by brain criteria, but is on a ventilator which allows the heart to continue to pump, may be an organ and tissue donor. Circulatory Death: A patient who is dead by cardio-pulmonary arrest may be a tissue donor, or may become an organ donor if, after a family initiates withdrawal of support, they agree to donation. A WRTC recovery staff member determines donor designation wishes of the patient. Each local registry is checked to determine whether the patient made a prior decision to register as an organ eye or tissue donor. The decision can also be found in written instructions such as a donor card, an advance directive, living will or health care power of attorney. The WRTC family services coordinator then discusses organ and tissue donation options and the patient s wishes with the family or next-of-kin. If it is known that the patient chose to be an organ donor, the family is approached and fully informed of the process. If the patient's wishes are unknown, the coordinator discusses the option to donate with the family. Brain Death: The coordinator first makes sure the next-of-kin understand the concept of brain death and have all their questions answered prior to discussion of the donation process. Circulatory Death: If the donor or family wishes to have support withdrawn, the coordinator that process will occur in the operating room rather than in the ICU as would normally be the case. Sometimes family can be present. The WRTC family services coordinator then conducts a complete medical evaluation and social history of the potential donor. In the case of an organ donor, the process of identifying the recipients and allocating the organs begins. 19 Washington Regional Transplant Community 7/2013

20 The WRTC recovery coordinator asks UNOS ( to run lists for each organ to be placed. Once recipients are identified, their transplant surgeons are called with the offers. If it is acceptable, the recipients go to their transplant centers to be readied for the transplants. The donor s organs are maintained medically by a WRTC recovery coordinator with the support of the hospital medical staff. Brain death: While the donor is on the ventilator, adequate heart rate, blood pressure, respiration and urine output are critical to maintaining the donor s organs for transplant. Circulatory Death: Before withdrawal of support, all comfort care measures required by hospital policies are put in place. Medical intervention is minimal prior to withdrawal. The operating room and the arrival and departure of the surgery transplant teams must be scheduled by the WRTC coordinator. Brain death: The procurement team consists of a surgeon(s), a nurse or other clinician, WRTC recovery coordinators and a recovery associate. Circulatory Death: Since withdrawal of support will happen in the OR, with or without family, only the attending physician and other hospital personnel are allowed prior to declaration of death. Once death is declared, the team as listed above is allowed to begin recovery. When the surgical team arrives, organ recovery takes place. A complete operating room staff and special surgical team is usually required for removal of heart, lungs, liver, intestines and pancreas; kidneys are removed by a local surgeon. Organs are immersed in protective solutions, packaged and are then sent to the waiting recipients or to research centers where appropriate. Tissue recoveries occur after the organs are removed. Circulatory Death: note that the heart cannot be recovered in this instance. The selected recipient is readied for surgery at his/her transplant center. The organ arrives at the transplant center, and the organ is transplanted into the recipient. For a tissue donor, a team is called to the hospital to a room prepped for the recovery. All tissues are carefully removed, packed in sterile conditions, and transported to a tissue bank to be prepared for transplantation, research or therapy. The donation of organs and tissues is a respectful procedure. After the organ(s) and tissue(s) are recovered, the donor s body is fully re-constructed so that there is no affect on funeral plans. Procedures are followed with respect and compassion by the recovery team. WRTC provides all recovery follow-up. This includes letters that are sent to the donor family, physician(s), nurses and other hospital staff at the donor hospital regarding the results of the transplantations. All costs relating to the procurement are billed to WRTC. These include, but are not limited to, operating room charges, surgeon s fees and transportation. The recipient s transplant hospital reimburses WRTC for procurement costs. In turn, that hospital is reimbursed by the recipient s insurance company or by Medicare. Sometimes the hospitals, by mistake, send bills to donor families. If this happens, they need only to inform WRTC to take care of the mistake. WRTC s Donor Family Advocate follows up with each donor family. This includes letters sharing the progress of recipients as well as offers of advice and support. WRTC Advocates provide telephone support, grief seminars and annual remembrance services for donor families. If the family desires, follow up is provided for as long as two years post donation. 20 Washington Regional Transplant Community 7/2013

21 Washington Regional Transplant Community Organ Donation Flow Chart Patient arrives at hospital HOSPITAL STAFF Recognition of potential organ donor Referral call from hospital to WRTC (703) WRTC comes to hospital to evaluate potential donor WRTC coordinates family care & preservation of donation options with hospital staff Brain death testing is completed Declaration of brain death with time of death documented in the medical record Doctor informs family of death (Does not discuss donation) Family continues to receive support, allowing them time to grieve and fully understand brain death WRTC determines donor designation. WRTC, working with hospital staff, discusses donation with family. If no prior designation and family wishes donation, authorization is given, organ recovery and transplantation occurs WRTC maintains correspondence with family, providing appropriate recipient information and ongoing bereavement care. 21 Washington Regional Transplant Community 7/2013

22 Donation After Circulatory Death Process Family decision to withdraw support Family decision to donate Comfort care measures and withdrawal of support Instead of in ICU, takes place in OR Patient experiences cardiopulmonary arrest Possibly Within 1 hour Patient does not expire, and is returned to the ICU Organ donation may not proceed; but after death, the patient may become a tissue donor. Patient expires attending physician declares death Surgical organ recovery may proceed after 5 minutes. Standard, but expedited, recovery procedure 22 Washington Regional Transplant Community 7/2013

23 Organs for Donation Potential organ donors are those who die from a severe insult or injury to the brain resulting in the irreversible cessation of all brain functions, including the brain stem, or those who are non-heart beating patients with unrecoverable brain damage. After death is declared, all brain dead organ donors are maintained on a ventilator to provide artificial means of respiration. Organ Function Application Heart Pumps blood to all body systems. For patients with end-stage heart disease (caused by cardiomyopathy, coronary artery disease, i.e.) Kidney Liver Lungs Extracts waste from blood, produces hormones regulating blood pressure. Makes proteins, removes waste, secretes bile for digestion, stores essential vitamins, produces blood-clotting substances. Take in oxygen necessary for blood cells and releases carbon dioxide. For end-stage renal disease, eliminates need for dialysis (caused by diabetes, hypertension, i.e.) For end-stage liver disease (caused by chronic cirrhosis, hepatitis, i.e.) For end-stage lung disease (caused by cystic fibrosis, emphysema, i.e.) Pancreas Secretes enzymes for digestion, secretes insulin to regulate blood sugar. To treat diabetes and associated risks (loss of sight or limb, i.e.) Intestine Absorbs fluids and nutrients from food For short gut syndrome, Crohn s disease, etc. Tissues for Donation Potential tissue donors are those who have died who meet certain age/medical criteria determined at the time of death. Tissue Function Application Bone Supports body structure, provide mineral storehouse Facial reconstruction, limb salvage, birth defect correction, cancer treatment, spinal and oral surgery Cartilage Skeletal tissue (e.g. nose, outer ear) Facial & other post-traumatic injury reconstruction Corneas Clear window in front of eye allows light in Restoring eyesight Fascia Fibrous tissue covers muscles & tendons Surgical repair (sports, cranio-maxillofacial, and other injuries) Heart valves Regulate flow of blood to and from chambers of the heart To repair congenital cardiac defects or replace cardiac valve where animal or artificial valves may not be indicated. Pericardium Membrane sac surrounding the heart Neurosurgery, brain operations, ophthalmic repairs Skin Protects against disease, infection, regulates body temperature Reduce pain, scarring, fluid loss, infection in burn patients; full thickness for reconstructive procedures (e.g. post-mastectomy) Tendons Attaches muscle to bone Correcting joint injuries Veins Circulates blood to heart For heart bypass surgery 23 Washington Regional Transplant Community 7/2013

24 Donor Hospitals and Health Care Facility Affiliations District of Columbia Children s National Medical Center George Washington Univ. Hospital Georgetown University Hospital Health Services for Children Pediatric Center Howard University Hospital National Rehabilitation Hospital Providence Hospital Sibley Memorial Hospital Specialty Hospital of Washington (Hadley) Specialty Hospital of Washington (Capitol Hill) United Medical Center (formerly Greater Southeast) Veterans' Affairs Medical Center Washington Hospital Center Virginia Annaburg Manor Nursing Home Fauquier Hospital Fort Belvoir Community Hospital Heathcote Health Center Inova Alexandria Hospital Inova Cameron Glen Nursing Center Inova Commonwealth Care Center Inova Fairfax Hospital Inova Fair Oaks Hospital Inova Healthplex Inova Loudoun Hospital Center Inova Loudoun Hospital-Cornwall Campus Inova Mount Vernon Hospital Northern Virginia Community Hospital Potomac Hospital Prince William Hospital Reston Hospital Center Stafford Hospital Center Virginia Hospital Center, Arlington Maryland Adventist Rehabilitation Center of Maryland Bowie Health Center Civista Medical Center Doctor s Community Hospital Fort Washington Hospital Gladys Spellman Specialty Hospital & Nursing Center Heartland Health Care Center of Hyattsville Holy Cross Hospital Laurel Regional Hospital Malcolm Grow Medical Center Mariner Health of Bethesda Montgomery General Hospital National Institutes of Health Clinical Center Prince George s Hospital Center Shady Grove Adventist Hospital Southern Maryland Hospital Center Suburban Hospital Walter Reed National Military Medical Center Washington Adventist Hospital 24 Washington Regional Transplant Community 7/2013

25 Other Regional Organ, Tissue and Eye Recovery Agencies LifeNet Health... Richmond, VA Medical Eye Bank of Maryland... Baltimore, MD Old Dominion Eye Foundation... Falls Church, VA Living Legacy Foundation of Maryland.... Baltimore, MD Donation for Research Washington Regional Transplant Community participates in multiple research protocols, which vary throughout the year. Research options can include work on discovering cures for diseases like diabetes, Alzheimer s, ALS, MS and others. They can also include bridge therapies for those waiting for transplants. For more information go to Whole Body Donation Each year thousands of people donate their bodies for use at medical schools for training and research. Researchers have an ongoing need for this type of donation to help in their work to find cures and therapies for many diseases. There is no upper age limit, and there is usually no cost for whole body donations.* For more information, contact the following: Georgetown University Department of Cell Biology (202) George Washington University Dept. of Anatomy (202) State Anatomy Board of Maryland (410) or 1 (800) State Anatomical Program of Virginia (804) Uniformed Services University of the Health Sciences (301) Howard University Department of Anatomy (202) *Please note that those who donate their entire body for research usually cannot be organ or tissue donors. If you wish to do both, you should check with the institution first to see if your wishes can be carried out. 25 Washington Regional Transplant Community 7/2013

26 Reasons for the Organ Donor Shortage Each year more than 28,000 people receive a second chance at life through organ transplants. Yet at the same time, more than 18 people die each day because of a persistent shortage of donor organs for transplant. Because transplantation is no longer experimental but a standard therapy for end-stage disease, the number of people on the transplant waiting list has increased more than six-fold since the 1980s. The number of donors, however, stabilized by the end of the 1980s and has remained virtually steady to date with some small increases. National Waiting List and Organ Donors Based on OPTN data as of September ,000 90,000 80,000 70,000 60,000 50,000 40,000 Donors Transplants Waiting List 30,000 20,000 10, Part of the reason is that many people who could donate say no for reasons that follow. Public education efforts are making some progress, and one of the results is that tissue and eye donation has seen a substantial increase. Much more needs to be done to counter the mythology of organ donation. 26 Washington Regional Transplant Community 7/2013

27 Why People Choose NOT to Donate Individuals do not inform their loved ones about their wishes regarding donation. Few people like to talk about their own mortality and, consequently, death or organ and tissue donation are not popular dinnertime subjects. Nonetheless, understanding the wishes of a family member in the event of his or her death is extremely important. Unfortunately, the trauma or critical care unit at a hospital is often the first place where a family discusses organ donation. Organ donation is an important personal decision that needs to be discussed with family members and friends well before the time comes for its implementation. The organ donor card, document of gift from an online registry, or a driver s license is a legal document in Maryland, DC and Virginia that expresses one's wishes about organ donation. Telling your family is also important, so they can help facilitate your wishes. The rate of organ donation is low in some multicultural communities. There is a high incidence of kidney failure due to diabetes and hypertension among African-Americans and Hispanics, and as a result, there is a disproportionate need for kidney transplants within these communities. However, as a group, African- Americans, Hispanics, Asians and other ethnic groups are more reluctant than Caucasians to give authorization for organ and tissue donation. This lower rate of donation is critical. Language barriers, strong cultural and spiritual beliefs, and a general mistrust of the medical community all contribute to this gap. More information can be found at Public education tries to address the many myths surrounding donation and can be an important step in solving this problem. 27 Washington Regional Transplant Community 7/2013

28 Many myths cloud public perception and understanding of organ and tissue donation. Some of the most common misconceptions include: 1. If I have heart on my driver s license, a physician or EMT will not do everything possible to care for me in an emergency situation. Physicians involved in a patient's care in an emergency or critical care setting are not involved with transplant programs. The OPO is not notified until all lifesaving efforts have failed and death has occurred or is imminent. Death can be declared only by following strict medical and legal guidelines. 2. Wealthy people and celebrities are moved to the top of the list ahead of regular patients. The organ allocation and distribution system is blind to wealth or social status. The length of time it takes to receive a transplant is governed by many factors: blood type, length of time on the waiting list, severity of illness and other medical criteria. Factors such as ethnicity, gender, income or celebrity status are not considered when determining who receives an organ. 3. My religion does not support organ donation. No major organized religion in the world objects to organ donation. In fact, donation is often encouraged as an act that exemplifies a basic religious principle - that the giving of life and alleviation of pain and suffering is the highest level of spiritual generosity and love that one can offer. 4. The donor family incurs cost for organ donation. Families of donors are NEVER responsible for costs relating to organ and tissue donation. These costs are paid by the donor program and later billed to the transplant center, which in turn bills the transplant recipient s insurance company. Donor families pay only for medical costs up to the time of their loved one's death. 5. Regular funeral services are not possible following organ donation because donation will mutilate the body. Organs and tissues are recovered using standard surgical procedures similar to those used in an open heart operation. The donor s appearance is prepared for normal viewing in an open casket. Additionally, organ donation does not delay regular funeral or memorial services. 28 Washington Regional Transplant Community 7/2013

29 6. I am too old to be a donor. There is no age limit for donation. At the time of death, appropriate medical professionals will determine whether organs and tissues are useable for transplantation. Recoveries for research or therapy, as well as whole body donation, are possible options. 7. I have a history of medical illness, so you would not want my organs or tissues. At the time of death, appropriate medical professionals will review your medical and social history to determine whether or not you can be a donor. With recent advances in transplantation, many more people than ever before can be donors. 8. I don t need to tell my family that I want to be a donor, because I have it written in my will. By the time your will is read, it will be too late to recover your organs. The most efficient way to be a donor is to sign up on your state Donor Registry, either online or at your local DMV/MVA office. Telling your family your decision allows them the relief of knowing what to do when the time comes. 9. I have heard about a business traveler who is heavily drugged, then awakens in a bathtub of ice to find he or she has had one kidney removed. This tale has been widely circulated recently over the Internet. One of the most popular urban myths of the late 1980s and early 1990s is the fictional story of a man or woman who is "picked up" in a bar only to wake up the next morning in a strange place minus one kidney. There is absolutely no evidence of such activity ever occurring in the U.S. or any other industrialized society. This myth has no basis in the reality of organ transplantation which is a highly complex system requiring skilled medical professionals and modern facilities. 10. Organs for transplant can be bought and sold on the black market. Unlike countries such as India and Peru, where an individual can sell one of his/her kidneys, the buying or selling of organs for transplant is illegal in the United States. (The National Organ Transplant Act of 1984). This law prohibits the buying and selling of organs in the United States there is no black market for deceased organs in this country, but currently legal authorities in New Jersey have brought charges concerning payment for living kidney donations. 29 Washington Regional Transplant Community 7/2013

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